When I moved back into my family home after four years of being hospitalised, I could think of nothing better than just returning. I was nineteen years old, I had been absent from our family home since I was fifteen. Just being able to be back there sounded like everything I wanted and more.
It was anything but simple though, as we realised that my home was not adequate for my needs. My old bedroom that I shared with my sister before I was ill, was unable to fit in all the equipment I needed. A few weeks into my return home highlighted how unsuitable it was, when I needed to be rushed into hospital and it took two ambulances to get me out.
The bannister was high and no matter how much the paramedics twisted the stretcher around corners, it was horrendous, and probably doing nothing for their backs. On the second emergency in a couple of weeks, we realised that it was actually a bigger problem than we had thought it would be. I needed to be able to be moved quickly out of the house and not have to be dangled over the top of the bannister to get down.
I was under a multidisciplinary team who dealt with all aspects of my health. This was before social care had been on the brink of a crisis. Back in 2010/2011, each patient had a care manager, an Occupational Health Therapist (OTj who dealt with practicalities of everyday tasks and then another who was dealing with the idea that my housing was making me more disabled. On top of this I had a physiotherapist, and a GP who were involved too.
It was apparent quite quickly that we needed to look at different options to improve my quality of life and my safety too. What if there was a fire? There would have been no way possible that I would be able to get out of my house quickly. The options were looking at an extension so I could have a room downstairs, or council housing.
At the time, there were concerns of me living on my own in council housing, because I was entirely reliant on 24 hour care. I couldn’t get out of my bed, I couldn’t support my body and my bones would break because of the osteoporosis. It could have happened, but I was scared. I had suffered so much in my time in hospital that I just wanted to feel less isolated and know that I was going to be looked after.
The option of an extension looked like the best one, but it was far from easy. When we started off the process, my care manager said that we would go through process of an extension but when I was ready to move to independent living, that could be done. This was not the case.
It took four years for the extension to finally be built. There were multiple meetings, arguments with builders and finances. At the same time, I had been rushed in and out of hospital, more times than I could count. One time, I had suffered with the starts of sepsis and the ambulance had to go onto the green of our house, and call multiple different staff to get me down the stairs as quickly as possible. My health dropped significantly as we waited for help and I had to be blue lighted in at breakneck speed.
Paramedics had to bring me back up the stairs because there was no space for me anywhere else. By the time the extension was finally completed, I was 23 and my goals in life had changed.
In the time after I had been moved downstairs, I struggled with the constant noise, as my hypersensitivities multiplied, and I suffered with sensory overload. I suffered more medical emergencies and despite my M.E., I was so relieved that I was downstairs because on multiple occasion the fact that paramedics didn’t need to wait for extra assistance to move me, saved my life.
Years later, Samuel came into my life and the balance shifted. My mum’s health plummeted and relationships between my parents broke down. The stress of having someone so severely unwell started to impact family life. The family home was no longer a happy place to be in. By this time, social services had got rid of care managers, and I was reliant on one incredible OT and my physiotherapist. Samuel moved in, and soon we got engaged.
We were stuck though, because my home was no longer suitable. My sister’s boyfriend had moved in and there were six adults living on top of each other. The physiotherapist said there was no more she could do for me in the room I was now in, and agreed that my house was now disabling me further. My incredible OT left, and I never had another regular OT to help.
We tried to look at whether there would be option for us to move out because I had outgrown my current confinements. My GP wrote letters, my physio also fought for it, a random social worker also came onto the scene but no one could help me. In this time, I felt more unwell because I was mentally exhausted. I was living here to the detriment of my health.
The housing association would not help me, and nor would any private renting. I was penalised because I was disabled, or because I received disability benefits. It was impossible. A special housing OT did an assessment, where she agreed I needed to move, but it was to no avail.
There seems to be no answer from the government for having accessible housing. Currently, there are 365,000 disabled people living in homes that aren’t suitable for their needs. Only 7% of housing stock meets the minimum standards. It is no wonder that there is a social housing disaster, as many councils do not even have an accessible housing list.
It leaves disabled people feeling like second class citizens who have no voice, in desperate situations. A few days ago, ITV shared a clip with them interviewing a disabled man who was being forced to live in a nursing home, as there was no accessible housing.
The other matter that is not thought of is the fact hat just because we are disabled, does not mean our circumstances don’t change. I know that I am incredibly lucky to have a roof over my head, but I can’t stand the thought of my daughter having to go to a room upstairs, where I would not be able to get up the stairs to see her because there is not the space for my equipment I need in my room.
Felicity is now six months old, both mine and her needs are changing, and I have spent all those months trying to fathom with Samuel how are situation was going to change. I know that I’m incredibly lucky to have the most supportive family, but I needed some independence and to live as a family of three.
Medway wasn’t able to offer that. I spoke to everyone I could, I went to citizens advice bureau and got given completely inappropriate advice. The man had no idea what to suggest and gave me a number that I could ring for help. Once I rang that number, I was told that the organisation only dealt with disabled children up until the age of 25, trying to help with education.
So after having no luck with the council, or any professionals for that matter, we started searching for a place to live. After months of indecisive moments wondering whether we would ever manage to find something suitable, we stumbled upon a flat in Essex. It is near to where my in-laws live, and is more accessible for me.
We are going to be moving from Medway to Essex for our new chapter as a family of three. I will always hold all the amazing people in Medway who have enriched my life, and can’t wait to make journeys to meet you all, and have people come to visit us. It is emotional to have come to this point, and to feel on a position to know this is the right step.
But I won’t believe it until the day it happens!
